on being a writer & raising a disabled child with an undiagnosed illness

Saturday, November 13, 2010

Children, writing, ethics--oh, yes, and disability

I've been off-duty as a blogger or blogger/essayist, or whatever it is that I do with this space for several weeks now, screwing up my resolution to write at least four times a month. I've been on administrative leave from work, due to a burst water pipe in our building--and working as much as possible on what I hope might one day be a book. About Robert.

So when an email landed in my inbox from an online writing site for women, an email with a link to what purported to be 'rules' for writing about my/our children, well, I didn't like it. Granted, this writer entitled the piece, 'my rules,' but these were developed in conversation with other women writers (a committee of sorts) and now promoted by SheWrites as, at the very least, interesting and provocative. Not a new topic, the ethics of writing about children have been discussed by Emily Bazelon on Slate, and by Ruth Marcus in her column at the Washington Post. And on a fair number of blogs as well.

What frustrates me about this? Perhaps I can enumerate.

1. I am deeply uncomfortable with the idea that a husband should have veto power over what a woman writes. If you read the items on the list carefully, the suggestion lingers that a mother's judgment is simply not that good. The husband's is better, or, at least less conflicted than the wife's. As though male parents are more clear-headed than female parents. As though we were living in a county where a male head of household has legal authority to make the rules.

2. Which brings me to a second point: is this an ethics issue at all, or just an issue of taste and aesthetics? Writers are conduits for expressing aspects of the human condition (yes, even avant garde writers, who push back against what the definition of 'human condition' is), thus, we write about other people. Do you need to obtain the permission of a stranger to write out your observations of them in the public sphere? What about the private sphere of the home? The homes of other people? Is it at all ethical to use an observation from life in fiction by camouflaging its details? What if you're a war correspondent or writing a book about war and you describe someone's death--is that OK to do? As long as you do it anonymously?

Asking whether something is ethical is asking whether something is moral. If writing is a mimetic activity, and the mimesis involves replicating immoral behavior, attitudes, or actions, is the writing itself moral or ethical? That would depend, I suppose, on its intent. But seeing as how the aesthetics of the day have abandoned the idea that writing serve as a conduit only for our better selves, how do ethics apply at all to the activity of writing? Contemporary writing of all stripes benefits from the idea that all modes of human behavior are worth exploring, and not just to teach moral lessons, but to contemplate the range of human experience.

In the case of women writing about their children, the issue breaks down on what we might call the public vs. private divide. The home itself is often considered to be private, yet it is also the locus of a rich vein of human experience: mothering, parenting. The considerations of children. Yet there are plenty of other venues that might be considered to be private and these have been written about without a call to ethics and morals: a lover's bedroom, the intimacy of the military foxhole and the private revelations of men about to die, conversations between friends, the confidences shared in various high political offices. All this has been written about without great hue and cry about morals. With the exception of a couple of recent political memoirs, to which objections might be described as mainly political. What are historians thinking when they publish the private correspondence of the dead? Can the dead now object?

Which is part of the issue with women writing about their children--that kids may object. That it may be embarrassing to them later, especially in this era of the world wide web. That is true. But is that a matter of ethics or a matter of good taste and good judgment on the part of the writer? I think it's the latter. Bad writing is marked by failings of judgment, among other things. The question to ask is, what is the value of writing about this incident or this strata of human experience? Well, the ongoing battle of the rights of women might be one reason to illuminate and describe and discuss the situation of women at home with small children. Historians have long turned away from the exploration of big events and great men--now, many explore the culture and attitudes of particular times. Writing by women about home life enriches those projects. Intimate writing. Honest writing.

To curtain off an entire category of human experience as entirely private and smear those who write about it with the label 'unethical' is disturbing. Or to suggest that certain rules should apply only to these writers (mothers).

3. Who are we trying to regulate and control with these sorts of rules? And why are women doing it to themselves? Doesn't this discussion simply diminish the ability of writers to do what they do, write, and write both well and poorly, about aspects of the human condition, giving editors and publishers with sexist attitudes yet another reason to dismiss women writers?

Yes, a lot of silly and embarrassing things are probably written by mothers writing about their children, just as silly things are written about other areas. What is the size of the audience for writing about children in this era of blogs? It depends on who writes it--in some cases, it's an audience of 25. But is it unethical to say silly or embarrassing things about your children? That strikes me as a personal issue, not a public one, that is, not a matter of ethics. And, frankly, people say silly and embarrassing things on the Web all the time--there's a small army of male bloggers writing about politics who embarrass themselves daily, often implicating other people in their foolishness. But no one's crying, 'unethical,' at them. We simply say they lack judgment.

Ethics and writing is a moving target, anyway. Not too many years ago, I took a writing workshop at a nationally ranked creative writing program. During one class, we discussed the ethics of Wallace Stevens, who often wrote patronizing and somewhat disparaging things about women and African Americans. After some conversation, the class decided that Stevens' objectification of certain groups or classes of persons was unethical. Because that is certainly what he did: he turned members of both groups into fetish objects for his amusement and the furtherance of his art. We were undecided about how our realization of this attitude in Stevens affected our ability to enjoy the rest of his work. Then, we turned to student poems. One of the first was written by a clearly talented young woman--it was about her experiences encountering people with disabilities in her life. In her poem, the emphasis was on the descriptive freakishness of the disability of each individual. Yes, she objectified them. When others began to praise her keen descriptive eye, I pointed out with some emotion the obvious objectification in the poem, and how hurtful that was. I tied that to our preceding discussion of Stevens. The class, to a person, defended the right of the poet to objectify people with disabilities. Oh, silly me, I forgot that people with disabilities are not actually human. In an attempt to clear the air with said young poet, I emailed more carefully worded analysis of what I'd been trying to say. She responded by telling me that she'd spoken to her mother, a speech therapist in the Maryland public schools, who had told her that "people like me" just couldn't accept the fact that their children were different, and held out hope that society might accept them as equals.

Well. Does that prove my point or diminish it? A few years later, I read a poem in VQR that objectified, no, actually dehumanized through description a boy with apparently severe disabilities, comparing him to a plant. I wrote and re-wrote a letter to the editor that, ultimately, I did not send. Why not? These are the lenses of other people's experiences and they see the world through their own eyes. I have a right to object, to question the quality of the art object, but can I deny them their attempt to come to terms with their experiences? Was what either of these poets did unethical? I think it was in poor taste. I think it lacked judgment for the feelings of other people. But were either of these people trying, deliberately, to cause suffering to people with disabilities? To diminish or endanger their lives? Probably not--they just struck that common cultural chord that causes us to shudder at people who are different. So, in that respect, the flaw in their work was that it said absolutely nothing new about the human condition--they had just enjoyed transgressing a line typically drawn over which we don't stare at people who are different. They meant no harm--they were just gawking. They were, simply, rude.

My real and earnest response to this has to be to write to be true to my experiences: a world in which my child is human after all. And whether I do it through a blog, a book, an essay, no one should tell me that I'm unethical for writing about the private sphere of the home or about my children. Or that it isn't serious subject matter. Mothers have a lot to add to the human dialogue and no one should censor us.

. I constantly run what I write about Alex through an internal audit, so to speak. There are times when it may look to some that I am making fun of stuff he does. But, there is this whole dealie in society based on, "stuff my kid says and does" humor. It is widely accepted as okay...but then if it is a special needs kid doing or saying the stuff it is un-PC for the mom to tell those stories. I try to only do those kind of posts now and then, because I don't want my entire blog to be teasing him for just being a kid.

Then there is cursing. I want to be as true to who I am as possible on my blog. And in real life I use some minor curse words but avoid the biggies..so I use those in my writing. I struggled with that for a while, but ultimately decided that if it is in the dictionary I am willing to use it.

I love the part you said about about how ettiquite has abandoned writing to only show our better sides. Here I try to be true to who I am in life too. I am a person who is serious and not serious at the same time, and I'm never shy about sharing what I've learned, even when it does not portray me in the best possible light. Yet, in Autism there is a subcultural that feels we should only focus on the positive things in our kid's conditions.

So glad you're working toward a book of prose! Your unflinching gaze and thorough sweep across your subject always satisfies. I had to stop reading this on my first go 'round (time, that devil), but have been so rewarded by returning to review and to finish. Wonderful work, Jeneva.

Jeneva - I'm so glad you led me to your post. Your comment on SheWrites had stuck with me and I'm thrilled to see the rest of what you had to say. So powerful! So well-thought-out. So well-written. I am now sheepish to write an article that will no doubt delve only surface-level into this huge topic, but will be quoting you for sure, in the hopes it will lead others to read this as well.

Copyright

Robert at age 10

The Back Story

My son Robert developed typically until he was 13 months old. In 1998, shortly after his first birthday he had a dramatic medical breakdown over the course of a few days. He was left with multiple disabilities: mobility, speech, feeding, and overall muscular deterioration.

In 2012, we pursued whole exome sequencing through Rare Genomics Institute and found an answer: Robert has dystonia 16, from rare and de novo variants to the gene PRKRA.

This blog remains a record of my thoughts for many years as we edged toward a diagnosis. There is no true chronology to this blog, just as our lives no longer follow a direct path into the future. I write about the past and present interchangeably, and try to explain what our lives are like. Sometimes I write about public policy and how that affects our lives. Sometimes I write about literature or poetry.

Other Good Stuff

Thanks to Wyatt

The name of this blog is drawn from Thomas Wyatt's poem "They flee from me." Wyatt's poem describes his perplexity with a 'newfangled' female independence in amorous relationships. But the phrase, "now they range, busily seeking with a continual change," represents for me the necessity of growth--by constantly moving forward and seeking new experiences, new questions, new answers. It is my favorite poem.